This Is MS Multiple Sclerosis Knowledge & Support Community

A lot of people state that Immune issues are not the route of the problem but the study about to be released will challenge that. The immune system may not be the cause but it does the damage. Remove that and what is MS?

http://www.ottawacitizen.com/health/Ott ... story.html

hmmmmmm

the story is from March 2013

DougL wrote:the story is from March 2013

In Canada they have been performing the procedure for over 12 years. They will only treat aggressive forms of MS. I am only aware of 1 person with RRMS who did it. He traveled to Germany and paid 55k euros for it.

Kronk wrote:

DougL wrote:the story is from March 2013

In Canada they have been performing the procedure for over 12 years. They will only treat aggressive forms of MS. I am only aware of 1 person with RRMS who did it. He traveled to Germany and paid 55k euros for it.

In Canada, they have changed things somewhat since the patient died from his reboot. The Citizen dredges up the same story every year, and they don't tell you what the good doctors will tell you in person: that one of the possible side effects is death. It still sounds a bit half-baked to me. I don't have any control-alt-delete keys.

Important information on chemotherapy, neurotoxicity and brain atrophy, from a leading neurologist

The BMT procedure requires chemotherapy to ablate or wipe-out your immune system to allow stem cell transplantation. The chemotherapy drugs that are used are neurotoxic, i.e. they damage the brain. In MSers who already have pre-existing damage their nerve cells are more susceptible to chemotherapy damage. The following study I was involved shows that when SPMSers are given chemotherapy they undergo increased neuronal loss, which is associated with faster progression on the EDSS and greater brain atrophy. The data speaks for itself.

http://multiple-sclerosis-research.blog ... brain.html


From a study at the U or R Stem Cell Institute

1. Chemotherapy kills myelin and OPC cells-- Chemotherapies are known to affect healthy brain cells, causing them to die off long after treatment ends. Studies have shown that months after exposure to common chemotherapies, oligodendrocytes and precursor cells continue to die, and the brain is unable to remyelinate.

This study is the first model of a delayed degeneration syndrome that involves a global disruption of the myelin-forming cells that are essential for normal neuronal function,” said Mark Noble, Ph.D., director of the University of Rochester Stem Cell and Regenerative Medicine Institute and senior author of the study. “Because of our growing knowledge of stem cells and their biology, we can now begin to understand and define the molecular mechanisms behind the cognitive difficulties that linger and worsen in a significant number of cancer patients.”
http://www.urmc.rochester.edu/news/stor ... fm?id=1963

http://ccsviinms.blogspot.com/2014/03/c ... rophy.html

cheer

The way I see it there are 2 main issues with MS.

1. Immune cells should not be getting into the CNS. Suggesting an issue with the BBB, CCSVI or what have you.
2. Immune cells should not be targeting myelin. Suggesting an issue with targeting of T-Cells.

To state CCSVI is the only thing going on in MS is false. Numerous studies show that people that don't have MS have CCSVI as well. MS is referred to as the perfect storm of factors that bring it on. Perhaps if you cure the permeability of the BBB you stop MS symptoms. Or perhaps cure the targeting of the immune cells and you stop the symptoms as well. As to Chemo killing brain cells, the patient in the article is a doctor, and received his treatment during med school. He also appears very physically fit. The other thing is there are MANY chemo drugs out there, is the article stating they all kill brain cells?

Whatever the resistance to the study the fact is 24 people treated with 24 end to symptoms. Its unfortunate this website is so polarized. Find a theory, and defend it to the death, instead of keeping an open mind and allowing new information to add to your knowledge and adjust your theory.

I don't think the writers of the citizen headlines are medical authorities, on symptoms or very much else. I also don't see very many people claiming that "CCSVI is the only thing going on in "MS", although, given recent information, it looks more and more like a primary problem in many cases. If it looks like a duck... does that mean peoples' minds are closed to the possibility it might not be in season? pw"MS" are being polarized, that is true. Many newpaper and other articles proclaiming the death of CCSVI, whatever that means. I don't think it is very fair to treat sick people like a studio audience with an applause meter.

If people lose a few brain cells, well they signed the consent form, didn't they?

I've seen a lot of closed minds, both with and without "MS". But mainly without, because I don't think many people here are willing to defend much of anything to the death. In fact, if anybody truthfully offered them life and wellness, with or without some brain cells, as long as they would sign an oath of allegiance to the Auto-Immune Theory, I bet everyone would sign, no questions asked. I will adjust my theories and allow new knowledge to add to the little I have, all you want. Got any?

It does matter which chemo you get. Are there any scientific studies comparing brain damage from various chemos, BMT chemos, or the ones used in Ottawa reboots?

Kronk---Here are the actual papers from this Canadian HSCT study, published in March 2013.
Not quite the same as the newspaper article. Patients were followed for 2 years. Says nothing about 24 treated, 24 no symptoms. In fact, there was no reduction of fatigue. There was brain atrophy and cognitive problems, as well as return of auto reactive t cells.

1. Diminished Th17 (not Th1) responses underlie multiple sclerosis disease abrogation after hematopoietic stem cell transplantation
http://onlinelibrary.wiley.com/doi/10.1 ... 4/abstract
The researchers claim that Th17 cells must be behind MS relapses, because the patients that had these cells abrogated, did not have new lesions on MRI.
HOWEVER, the auto reactive T1 cells came back, even after treatment.

Re-emergence as well as in vivo expansion of autoreactive T cells to multiple myelin targets was evident in all patients studied. The reconstituted myelin-specific T cells exhibited the same Th1 and Th2 responses as preablation myelin-reactive T cells. In contrast, the post-therapy T-cell repertoire exhibited a significantly diminished capacity for Th17 responses.

So, if autoreactive t cells come back, is this therapy really worth the risk? Will those Th1 and Th2 cells eventually cause new lesions and progression? That's a question patients need to discuss with their doctors.

2. Another paper published from the Canadian study---showed no reduction in fatigue for any of those who were treated with HSCT. I would think fatigue is considered an MS symptom?
http://www.jns-journal.com/article/S0022-510X(13%2902969-9/abstract

3. Another paper from the study, showing that there were cognitive changes and substantial decrease in brain volume after HSCT.
http://www.msard-journal.com/article/S2211-0348(13%2900048-5/abstract

I have no doubt there is an immune component to MS---especially in the early RRMS phase of the disease. But ablating an immune system with neurotoxic drugs (not my words, but the words of neurologists),
http://multiple-sclerosis-research.blog ... brain.html
knowing that autoreactive t cells will come back anyway, there is no reduction in fatigue, and there is brain atrophy and cognitive changes is very severe....as was the severity of the patients treated. And needs to be fully understood.

We should all be thrilled for Dr. Normandin! This therapy was a life-saver for him. But he had a very specific, highly inflammatory form of RRMS.
Linking newspaper stories without reading the published research won't help people get a real grasp on what's going on.
cheer

Abbreviations:

"MS": Multiple Sclerosis (sic)
BMT: Bone Marrow Transplantation
SP"MS" Secondary Progressive "MS"
"RR"MS Relapsing-Remitting "MS"
DMTs: Disease-Modifying Therapies
EDSS: Expanded Disability Severity Scale
CLL: Chronic Lymphocytic leukemia
HSCT: Hematopoeitic Stem Cell Transplantation

I think maybe they were saying that the autoreactive cells came back, but the T17 cells came back with a diminished response, so they were the cause of "MS". And that maybe the new T17 cells prevented the autoreaction against myelin.

From "More on BMT, neurotoxicity and brain atrophy":

The bottom line is that if you have SPMS BMT is likely to accelerate your disease progression. As a result of these observations and other data most MSologists have stopped doing BMT in SPMS and limit it to those with RRMS. However, with the advent of highly-effective DMTs such as alemtuzumab, natalizumab, fingolimod and the anti-CD20s in development it is hard to justify BMT in view of its risks.

They are now lumping cognition with muscle fatigue and now instead of chronic fatigue, CF means cognitive fatigue, whatever that is.

I think there is a worse problem than this concentration on T-cells and ablation, whether it is via chemo drugs or monoclonal antibodies. It is this: the notion that once one has "progressed" to cross that magic EDSS 6 RR/SP transition line, one is no longer eligible for new drug trials, and more importantly to get treatments that have been shown effective (on various subsets of symptoms).

"Too much too late" and "too late for much" reflect the general attitude toward treatment of anyone who has crossed this line. It is considered that if you are SP"MS" there is no chance to get back everything you have lost, so it's time to cut losses and move on to more hopeful prospects. They have given up on you.

Freedman editorializes

"...perhaps due to the persistance of disease-causing immune cells. Ridding the body of the disease-causing immune system or immunoablation could in theory prevent resurgence of the disease."

It is clear which side of this argument the practitioners of immunoablation are on.

My brother has had great success with his CLL and BMT. I do think BMT has its problems, especially with "MS" and brain shrinkage. But I would rather have him in the shape he is in now, than before his BMT.

In fact the term "DMT", hidden in abbreviation, and avoiding carefully saying anything like "cure" suggests that these drugs "modify" the disease. The question remains, if we don't know the cause, how can we be modifying it? It is all smoke and mirrors and double-speak press propaganda.

I tend to think our bodies react like "holy hell, I nearly died from that!", redoubling their effort to correct problems, and pull out all stops in the healing effort. Plus there is more in bone marrow than we know.

I am not so sure about HSCT or "MS". The effects on cognition and progression in general are inconclusive. The brain continues to atrophy. The longer term is unknown, but nobody expects reversal. I tend to believe that if anything meaningful had been done, the healing process would begin, and that the neuroplasticity would at least show in disability after 2 years or so.